ALS Caregivers and Beyond

In this episode of ALS Caregivers & Beyond , co-hosts Mary Ward and Lara Garey welcome their second guest, Lisa Musselman — a fellow caregiver, advocate, and newly selected Elizabeth Dole Foundation Fellow. Lisa shares her 14-year journey caring for her husband Andy, an Air Force veteran living with ALS and FTD, and reflects on how caregiving has unexpectedly awakened her passion for advocacy....

In this heartfelt conversation, Lara and Mary return after a year-long pause to reflect on the transitional journeys they’ve each faced as ALS caregivers. Both of their husbands, coincidentally named Tom, served as veterans and live(d) with ALS—Tom Garey, who passed more than three years ago, and Tom Ward, who continues to fight the disease. Lara shares how this past year has brought her moments o...

In this unforgettable episode, we broke new ground by podcasting face-to-face—no Zoom required. Lara and her special friend, Grant Trevarthen, visited Tom and me for a few days, and we had the privilege of having Grant as our very first guest. Lara and Grant, both living in the ALS Beyond, shared their experiences and insights with deep sincerity. Being in their presence was truly an honor. I've r...

In this episode, we’re embracing new horizons. One of us has been on exciting adventures, exploring both nationally and globally, while the other has been discovering the beauty and challenges of staying local. Join us as we share the lessons we’ve learned and reflect on how our lives are evolving. To our beloved ALS Caregiver & Beyond community, thank you for being with us on this journey. Yo...

The first quarter of the year is wrapping up and it's been a whirlwind for both of us. We share where we are in this caregiver life (Mar) and where we are in the Beyond (Lara). There has been lots of growth for both of us. As always there isn't a minute of our conversations that we do not enjoy thoroughly. No one sees us more clearly than those who know ALS. We talked about Mel Robbin's podcast ep...

In this episode, Mary and Lara discuss the strategies they have learned and continue to practice to help ease the ALS caregiver and survivor journey. Both Mary and Lara discuss how they came to these practices at a time that was right for them. They both still struggle with their journey, but having something to lean into when the journey becomes too hard has been the key to finding their paths fo...

This time of year, the holidays, can be a challenge for us in the ALS community, now and in the afterlife. We do our best to figure out ways to make it palatable. Sometimes we succeed. Sometimes we don't. It's very individual to know what will work for you. Lara and I agree that staying away from Social Media for a few days before, during, and after a holiday can be helpful. Several years ago, whe...

Lara and Mary dig into their experiences when sympathy from others produces big feelings that are not always positive. Lara says "It's the look" and it is, isn't it? They also share some big laughs when Mary shares the crazy things Tom says! With each podcast, it is easy to see how this concept can be applied to them: To be listened to is healing. (The Covenant of Water, Abraham Verghese). If you...

Mary & Lara chat about finding grace and its value to their life. They have each discovered in their own way that grace frees them from the constraints of feeling guilty, encourages them to be kind to themselves, and gives their hearts relief. Have you found the gift of grace? Please let us know and we will share it on the podcast. We enjoyed another Pema quote this episode: From the very begi...

Lara and Mary explore the need to belong, the loss of belonging, and the uncertainties of future belongingness and how they feel about it. This may resonate with ALS caregivers and those living the beyond life. Their belongingness tends to be in lanes they didn't seek out or expect. The Science Behind Our Need to Belong - Insights into the history, present, and future of belonging research Brene B...

Yes, that is exactly what Lara and Mary are becoming...fix-its. They are learning to fix the practical and seemingly improbable, such as a water irrigation system! The more they learn to fix, the more confident they become in their abilities. Mary shares a quote that finds solace in over and over again: “Things falling apart is a kind of testing and also a kind of healing. We think that the point...

Hello! Welcome to episode 7. Lara and Mary wrap up their conversation regarding the Elizabeth Dole Act. Check out their conversation regarding the pieces of it that are most relevant to our veterans with ALS and their caregivers. As is their way, Lara and Mary start off the podcast discussing their current events, as well as, emotional temperature! As they close out the podcast they leave us with...

Gratitude can be a challenge to find some days. In this ALS Caregiver & Beyond life, Lara and Mary embrace a practice of mindfulness and gratitude. For the days they fail to find something to be grateful for they have their fallbacks, such as being thankful for a sunny day, good weather, or a cup of coffee in the morning. Why bother if you have to scratch for some gratitude? Because it forces...

In episode four we talked about advocacy and our efforts over the years. Today, we dig deeper into a piece of legislation, the Elizabeth Dole Home Care Act 2023. The components of the legislation we focused on in this podcast are the following: Create a centralized website to share information and resources related to home and community-based programs and help veterans and caregivers determine the...

Lara and Mary talk advocacy in this episode. First, they check in with one another and discover that they each had an unexpected recent experience. They talk a bit about how these experiences indicate personal growth. Then they dig into advocacy, their why, and how. They have spent so much time using their voices in small and big ways for the ALS community, in particular, the veterans with ALS lan...

Lara and Mary share how the ins and outs of navigating their emotions are tricky sometimes. They can lose sight of life outside of ALS and the places it takes their feelings. They have learned how to meet their own selves in the place they are in with self-kindness. Take a listen. Send them a message if you'd like to share with them or perhaps be a guest on the podcast. They'd love to hear from yo...

Some days are like quicksand. We can't move, forward or backward. Moving backward could be an option if it meant it helped us move. We'd much rather move forward. We get stuck. Join us as we talk about where we are right now in our heads and hearts. To reach out to us send an email to either Lara Garey: laragarey@yahoo.com or Mary Ward: maryhahnward@gmail.com #ALS #ALScaregivers #ALSsurvivors ---...

In this first episode, Lara and Mary share big feelings about how the disease impacts them and the role of advocacy in their lives. Storytelling is something they have in common. It helps them cope with life. They are hopeful that through their stories and conversation on the podcast, others will find comfort and perhaps see themselves. They love humor and use it often to lighten their load. We'd...